Diagnosis: Yep, It’s Asperger’s

You’ve been around my entire life, but I’ve never seen you
until now. Everybody else saw you and christened you
crazy, nerdy, or retarded through their own lenses… But I christen you
different, with a middle name of
focus.(from my poem, “An Open Letter to Asperger Syndrome”)

Most of you who have been following me for the last few months probably know that I was a self-diagnosed, self-identified Aspie. Earlier this year, my counselor and Ihad discussed the very real possibility that I had an autism spectrum disorder. I proposed Asperger Syndrome for several reasons: 1) because I was verbal before age 3 and never lost verbal ability (most with classic autism either lose verbal ability or don’t have it before age 3 or so), and 2) other symptoms, such as obsessive and narrow interests and difficulty with social cues and interaction, also fit me. My counselor agreed, and thus began my journey to an official diagnosis.

First Things First

First, I had to decide whether I wanted an official diagnosis or not. I thought about it at first and realized that I didn’t really need the diagnosis to tell me anything that I didn’t already know. However, I thought about three advantages of having one: possible access to services meant to help people on the spectrum; documentation I might need for protection under the law, namely coverage under theAmericans with Disabilities Act of 1990(ADA); and, the ability to request workplace accommodations. When I talked about this with my fiancé, he also encouraged me to pursue an official diagnosis. All of these things considered, I decided to move forward with trying to getting one.

Next, I had a conversation with my counselor. She did mention that one issue with diagnosing autism spectrum disorders is that different doctors might come up with a different diagnosis: one might say Asperger’s, one might say high-functioning autism, another might say PDD-NOS, and still another might say that I didn’t have a spectrum disorder at all. We also briefly talked about the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, otherwise known as theDSM-V. I now understand that it is supposed to be released in May of 2013 and will roll related conditions – Asperger’s, classic autism, PDD-NOS, and so forth — into one diagnostic category, autism spectrum disorder. She postulated that this might solve the kinds of diagnostic problems that she had mentioned as well as help pave the way towards insurance companies covering costs related to Asperger Syndrome. While I wasn’t completely cognizant about these kinds of issues, I understood enough to know what a combination of all of these conditions in the DSM-V might mean. I plan to post about this more at a later time, after I’ve done more research.

As I mentioned in my very first post, she wasn’t able to find an instrument that measures the presence of Asperger’s or autism spectrum disorders in general that was usable on adults over the age of 21. However, she was confident of her professional opinion, which I trusted as well. Also, I had taken two online assessments which strongly indicated the possibility of a spectrum disorder: the Aspie Quiz, which was developed by individuals with Asperger’s and was inspired by other psychological instruments; and the AQ (or Autism Spectrum Quotient) test developed by psychologist Simon Baron-Cohen and his colleagues at Cambridge University’s Autism Research Centre. I scored high on the Aspie traits scale of the first test and scored a 35 on the second (32 indicates a possible autism spectrum disorder). Of course, there is the caveat that online tests cannot be a substitute for a diagnosis, and I did want another professional analysis or evaluation just to confirm my suspicions. So, I began making phone calls.

Next Step: Finding a Provider

As you might already know, it can be somewhat difficult to find a medical or mental health professional that diagnoses adults for autism spectrum disorders. An article in the Columbus Dispatch about Asperger Syndrome and employment difficulties mentioned two area organizations that might be of help: theOhio Center for Autism and Low Incidence(OCALI) and theNisonger Centerat the Ohio State University.

I first contacted OCALI and explained that I was an adult who suspected that I had an autism spectrum disorder and was looking for a professional who could diagnose me. OCALI pointed me to the Nisonger Center. I called them next and discovered that while they no longer diagnose adults, they were able to point me to some professionals who could. Interestingly enough, one of them practiced at the very clinic I already went to in order to see my current counselor.

When I told my counselor about this, she indicated that yes, she knew this professional. This was sometime in August. I asked if there was any way that we could do a joint session. Since this counselor does her own scheduling, my counselor conferred with her to find a good date/time where we could all meet. After a couple of tries and one cancellation, we were able to schedule a session for this past Friday the 8th.

Now, my counselor had said a few weeks back that at any time she could write a letter documenting that I did indeed have an autism spectrum disorder and the letter would outline the kinds of accommodations I might need. I did still want a joint session, if nothing else to confirm what I, my fiancé, and she already thought. Also, the other counselor had trained at the Nisonger Center, which was a plus. I decided to go forward with the joint session.

D-Day

The 8th came. I left work a little early after my fiancé came to pick me up. We grabbed a quick dinner near the clinic and then arrived about five minutes early. She came out into the waiting room after a few minutes and we went back to one of the rooms, where we had this session for about an hour. Unfortunately, my own counselor had come down ill and was unable to make it, so it was just the three of us that afternoon.

She began by asking me why I thought I had an autism spectrum disorder. I spoke a little bit about my childhood – my mother’s observation that I had trouble with eye contact, the teasing from bungling social rules, the pranks played on me, my failure to understand sometimes what my classmates meant (which got me laughed at behind my back), and so forth. I fast forwarded to my adult life and mentioned the panic attacks and some of the sensory trouble. Then I mentioned my college friend who had begun suspecting that she had Asperger’s and reading the symptom list – and realizing that about two-thirds of it fit me. Then I mentioned my research and how I began cataloging the events in my life which could very well be explained by Asperger’s.

She also asked what I thought an autism spectrum disorder diagnosis would do for me. I mentioned the reasons I’d talked about above – to validate our already existing suspicions plus for legal reasons (accommodations and such).

She then began to use an instrument to ask me questions about my childhood and now – language acquisition and difficulty, sensing the emotions of others, sensory issues, and so forth. It wasn’t completely a blow-by-blow, step-by-step use of the instrument, but she did ask me quite a few questions from it and took a good deal of notes as I talked. She asked my fiancé a few questions too – how able I was to sense if something was wrong with him, and so forth.

After our interview, she concluded and thus validated our opinions that yes, I had a spectrum disorder. We agreed that it was Asperger’s because of some of the symptoms I’d already mentioned to my counselor, such as a lack of language delay. She then did something that I didn’t quite expect (probably because I hadn’t really thought about it before): she recommended that I try to get an evaluation from the Ohio Bureau of Vocational Rehabilitation(BVR). This was because earlier in our conversation, she asked what my educational background was (I have a Bachelor of Arts in Communications from Bowling Green State University as well as a Master of Business Administration from the Keller Graduate School of Management) and what my employment situation is (I’m an administrative assistant for the graduate school of a local college). Probably observing that I am underemployed for my educational background, she asked me about this. As I mentioned in my post about Aspies and workplace issues, I’ve kind of drifted around careerwise without a real clear direction, but I hope to change this with some real help and some real work on my part.

I’d also mentioned during our conversation that I’d encountered sensory issues at work, with were solved by a recent office move. This was before very many people that I worked with knew that I even had Asperger’s, much less the upper management who had planned said office move. She recommended that I see an occupational therapist that works with adults on the spectrum with workplace sensory issues. Reflecting upon this, I think this is a good idea. Right now, I have the set of accommodations that I need, but I think further analysis and evaluation of what might better help me in the workplace might be beneficial.

What Do I Do Now?

The next step is to obtain a letter which documents my diagnosis, which should be happening sometime next week. Once I have this, I will contact the Ohio BVR and find an occupational therapist per her recommendations. I will also continue to work with my current counselor about issues related to Asperger’s as well as PTSD.

I feel a little relieved that I have an official diagnosis now. Like I said, it doesn’t tell me anything that I didn’t already know, but I no longer feel in “limbo” not having one. One thing I plan to explore and write on at a later date is the process for an adult woman to obtain an Asperger’s or autism spectrum disorder diagnosis. I am fortunate that I had a very good and astute counselor as well as a practicing professional already at my clinic with expertise on autism spectrum disorders. What I’d like to research is whether my experience is typical of an adult who suspects that she is on the spectrum or if other possible experiences on the road to diagnosis exist.

Thank you again for joining me in this step on my journey. Please talk back to me – tell me about your own experiences with diagnosis. Do you want, need, or care about a diagnosis? Have you been able to obtain one? What difficulties have you encountered — either in finding a professional, dealing with insurance or the costs of diagnosis? I’d love to hear from you.

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20 thoughts on “Diagnosis: Yep, It’s Asperger’s”

I am 46 years old and also discovered Aspergers through a woman friend who was diagnosed with it. I think I have it, my therapist thinks I have it and my doctor thinks I have it. I scored high on both of the online tests you mentioned. But it’s been very hard to find someone who specializes in this kind of diagnosis. I have made many phone calls and I either get someone who does not take my insurance, or I don’t get called back. I wish this part of it wasn’t so hard. Like you, I am interested in workplace accommodations; i have a lot f struggles in the workplace, not so much with the work but with the social and physical environment that make it hard to get the work done (I get it done but it;s very painful and exhausting). I’m also hoping that an autistic spectrum diagnosis will help in some family and parenting problems that I have. I think it will help to look at my challenges from the point of view of an autistic, instead of trying to follow the adive and expectations of people with brains that function differently from mine.

Is there anyway I can e-mail you? I think (well, I think I’m sure) I have Asperger and I know you’re not a counselor, but I first want to get an opinion of someone who is very experienced in this spectrum. I just realised this a few days ago, so it’s all kind of new to me.

“I feel a little relieved that I have an official diagnosis now. Like I said, it doesn’t tell me anything that I didn’t already know, but I no longer feel in “limbo” not having one. “

While you mentioned a few practical reasons it appears that the key reason for wanting a diagnosis is a desire for validation and belonging to a social group (‘the aspies’). That seems to be a theme of most writing online by persons with Asperger – the identity aspect is extremely important, almost like a sort of tribe membership.

You do make a valid point about “tribal membership” — in fact, I’ve written at least one poem comparing us spectrum folk to being in a tribe of sorts. In some cases, I’ve witnessed that it’s almost like a badge of validation, the diagnosis. With the Interwebs being what they are, it is easy to make up a false identity and act as such online, so the trust factor can be very important. But I have seen at least one case of someone’s Asperger status being questioned. I personal make no distinction of respect between self-dx’d and officially dx’d, but unfortunately, others do. And such distinctions can be troubling, especially considering that due to lack of services, some adults may not be able to obtain a diagnosis at all.

All of that aside, the practical reasons as you mentioned are important too, namely to receive needed services and occasionally legal protection with recognition of one being disabled (in the United States, it’s the Americans with Disabilities Act that covers disabled people). Asperger’s/Autism are from what I understand protected under the act, and I obtained proof of my diagnosis for my personnel file as a CYA measure.

I see it as a strange phenomenon that social identity hangs on a diagnosis so heavily that the diagnosis is like a badge of validation, as you say. I think the concept of a ‘status’ related to a diagnosis is unique for Asperger’s Syndrome. It does put a lot of power in the hands of professionals who may or may be able to assess a person’s personality structure based on a few interviews and tick-boxes, may differ in opinion e.t.c.

I have read that the classic AS criteria work differently in women and/or build on expired stereotypes. For example ‘lack of imagination’, ‘lack of empathy’, ‘hyper-nerdy narrow interests’, ‘no friends’, ‘impaired social skills’ e.t.c. However, if the classic criteria are not valid, what do the professionals go by? and do they all go by the same criteria?

And how is the boundary defined between ‘mild asperger’s’ and ‘having symptoms that overlap with asperger’s’. For example sensory processing disorder and social anxiety can be symptoms of the Asperger’s syndrome but are also independent diagnoses.

You do make a good point about power in the hands of professionals. I think this, and also due to a lack of access to services and a lack of attention to the phenomenon of adults having autism or Asperger’s, is why so many of us are wandering around as self-dx’d. And yes, too many of us have been defined by the stereotypes. I’ve gotten a few “Gee, you look normal to me” responses because people, as I pointed out in the introduction on my home page, still think of the classic stereotype of the socially deficit, nerdy white male when they think of Asperger’s. And I don’t fit that in any way. Nor do many of the women I have come across online and in RL fit this stereotype, either. And that’s exactly what a stereotype is — a limited image of a group of people based on a few characteristics.

And from what I understand from when I was diagnosed, the difference between “having symptoms” and “mild Aspergerg’s” are the existence of additional characteristics besides sensory processing disorder and social anxiety. I show characteristics of both of those, but in my case, you have other phenomenon going on — hyperlexia (especially as a kid), early language development and higher than normal vocabulary and expressive capability (hence why Dr. Atwood has said that we’re sometimes referred to as “little professors” as children — and this is mostly true of Asperger’s), narrow interests, difficulty understanding or reading people based on facial expression, tone of voice, etc. And there are even more beyond these — Rudy Simone’s list of female Aspergian traits (http://help4aspergers.com/pb/wp_a58d4f6a/images/img244154ad237783e339.JPG) is a good example. As for me, the social anxiety did not begin until I was already in school and after I’d been teased and bullied — so it was a result of an already existing issue.

I can’t speak to what other professionals used. I do know that when I was diagnosed, the professional I saw used an instrument, but it helped to guide her questions — she didn’t stick to it “by the book” and based on her own professional background and training with autism and Asperger’s, she was cognizant enough to recognise spectrum traits. Whether a professional can recognise this or not, or sticks to the old stereotypes, is based a lot on what they were taught and how they were trained.

If I go by Rudy Simone’s list then I tick most of the boxes either now, or as issues I have overcome in the past… I think. However, some of the points are scale kind of questions that could be interpreted in different ways. Anyway, that is not an official set of criteria used to diagnose people. Who has made the list?

What is seriously hard about defining the Asperger Syndrome is to define what normal is.

For example, humans are not exactly telepathic and often get it wrong when they think they can read others’ feelings. Some get it wrong all the time but don’t care. So where does the boundary go between normal off the mark and autistically impaired?

I mean, it is easy to see the social impairment in LF autistic kids (I have worked with some). But what when the impairment is ‘invisible’? Then it can’t mean ‘doesn’t work’, because that would be very visible, it has to be a subtler difference.

– How confused are everybody in general about other peoples’ intentions? I know it is normal to be confused about intentions because many complain about other people at work, their boss, family members e.t.c. who they feel act irrationally.

– What is implied in ‘read face expressions’ and ‘read tone of voice’? To tell the difference between face expressions (angry, happy, worried, e.t.c)? or to actually understand that person’s thoughts and inner state of mind based on expressions. I think that is only possible for someone who knows the person very well and can figure out the person’s context based on experience.

– What is an ‘all-absorbing narrow interest’?

ALL absorbing? That sounds wild and unlikely. If not ALL-absorbing, how many % of one’s awake hours and energy make it qualify as an ‘all-absorbing interest’.

And how narrow is a ‘narrow interest’. Again, it is easy when looking at the extreme end of the scale – train-spotting, bush tailed pony-squirrels in Canada in the 1970s (made that one up) and so on. But where does the boundaries go in the other end of the scale…

As you can hear, I have read the official criteria thoroughly, and am still confused:-)

I come to think of an interview with singer-songwriter Ladyhawke long ago in a music magazine. She said that she had bitterly regret being public about her Asperger diagnosis because she had received many hurtful comments along the lines of ‘you don’t have aspergers’ from people with asperger/autism diagnoses (including kids). They doubted her diagnosis because she is a sort of pop-star, have friends, do concerts and music videos, looks good, e.t.c. I think they thought it was unfair or make them look bad if she can have the same diagnosis AND be successful in a mainstream kind of way.

I found this article about Ladyhawke (http://news.bbc.co.uk/newsbeat/hi/music/newsid_7745000/7745453.stm) and I recognised a little bit of the same things in myself…the inner contradiction, especially when it comes to my craft of poetry (the inner critic telling me “you suck” versus the inner heart drive to keep going). I can total understand her wariness about speaking of it. There are days that I wonder if starting this blog, disclosing, etc. were the right things to do…and then I think about the positive effects and then keep on going.

People can be so limited in their thinking. This is why autism is a spectrum. Down on one end, you have someone like Tito Mukhopadhyay or Amanda Baggs who only can communicate by typing and who have profound difficulties sometime (especially with sensory processing and anxiety). And then on the upper end you might have someone like me or Ladyhawke who don’t appear to be different, but are on the spectrum and do face our own challenges every day. I hate to use the terms “high functioning” or “low functioning” because they are meaningless, limiting, and continue to promote the limited thinking and ignorance as to what autism and autistic people really look like. They’ll point to Mukhopadhyay or Baggs and say, “yes, this person is definitely autistic” but they would question me or Ladyhawke because to them, we appear so “normal”. But what is normal anyway except an image or a concept? Often, the image does not match reality. You might have heard the saying about Asperger’s being a “invisible disability”. This is one of the reasons why.

How do we deal with this? The only thing that comes to my mind is continued education, continued promotion of truth and positive messages about autism, and if more of us feel comfortable with sharing our stories, and keep going despite times in which we might be discouraged. Trying to deal with the media’s sensationalism — that’s a whole ‘nother topic that needs to be dealt with too. But I will address that later.

I’m only aware of the DSM-IV being used as official diagnosis criteria, at least here in the United States. I am not sure what the name of the instrument was that was used to diagnose me, or what criteria it uses for diagnosis, or whether it is also based on the DSM-IV (it’s likely, but I’m hesitant to speak to that unless I know for certain).

And you pose an interesting thought about defining normal, and thus defining Asperger’s or autism against that perceived “normal”. This could lead to many gray areas as you suggest in your comment. Are the criteria you cite from the DSM-IV or from another source?

I think more research is needed. Thank you for the idea and the impetus for it.

Now I’m even more intrigued. Which websites did you find said descriptions on? I’d like to do a side-by-side comparison to see how what you’ve found compares with the DSM-IV definition of Asperger Syndrome.

I worked as a casual with LF autistic teenagers (and one adult) some years ago and read the material the employers gave me plus what I could find on the Internet. More recently I have looked for information on the Internet about adults with Asperger’s, lately specifically women. Descriptions that have stuck to my mind are the before mentioned plus ‘impaired imagination’, ‘trouble understanding metaphors’, ‘monotone voice’, ‘problems with eye contact’, ‘love of repetitions’ etc. Most of those descriptions are ‘general’, and mainly based on males, I think.

And yes – the big mystery is what ‘normal’ is… I would love to find a blog that says in its intro: “I am normal. Now I will explain what that implies, precisely”…

This is some very good information. I think Dr. Attwood’s description is very thorough and I saw a lot of myself in it. As for diagnostic criteria on Wikipedia…I scanned it a bit and I do understand some of the underlying issues here, including a lack of continuity between the sets of criteria.

And since the DSM-V is on the horizon, I think this topic bears further exploration.

Thank you, Mados. You’ve given some very good ideas off of which to springboard for an exploration of diagnostic criteria.

About a month ago, it occurred to me that I should look up Aspergers and when I read about Aspergers, and the family shared traits, it was like reading about myself. It made sense. I’ve always been told “You know you’re weird, don’t you”, “You are odd, you know”, “different”, “ditzy”, “eccentric”, “out there”, “are you sure you don’t take drugs?”….. I have people issues and for the life of me, can’t work out where I go so terribly wrong, so that I end up bullied at work, by friends, by family then I get told off for not trusting people…

I suspect I was an obnoxious child (socially inept). I suspect I’m boring now (still socially inept).

My recall (phone numbers, dates that things happened, birthdays) used to be amazing. These days I can barely recall the name of the book I’m currently reading, or the main character’s name, despite my most recent (online) IQ Test scoring at 170. I struggle paying attention. I watch myself, I’ll be ready ga book, iI like. I’ll drop it half way through a paragraph and go start doing something I’d planned to do hours ago and forgotten. I don’t realise I’m about to do this and I don’t know the task is what I’m doing until I’m half way through it.

I rock, shake my foot, or leg. I’m the messiest person in the world (but can find anything) but any washing, I hang on the line, has to have matching pegs. It used to be that each line had to have all matching pegs. If someone else hangs the washing out, I will change the pegs on my personal washing.

Anyway. I’m rambling (another trait).

I am concerned (I’m in Australia) that with a formal diagnosis, I might be expected to disclose this information to perspective employers, our government (people with car licenses are expected to notify the licensing department if they suffer diabetes, depression……. .) and I’m scared this will be held against me. I don’t need more restrictions.